quote:

---

Originally posted by Lymetoo:
It's the other way around. Most with MCS actually have MCAS.

---

quote:

---

Originally posted by Catgirl:
So are DAO blockers good for this?

---

quote:

---

Originally posted by LisaK:
how the heck do you get THAT diagnosis?

sounds like just more work for me. every time I think it's something else, it's something else than that last thing!

when and where does it all end?

---

quote:

---

Originally posted by LisaK:
sixgoofy, how are you working on the mercury? or did you complete that?

---

quote:

---

Originally posted by packypacky:
I believe it's Multiple Chemical Sensitivity.

http://www.ciin.org/mcs.html

---

Packy,
One of the co-authors of that webpage, Cindy Duehring, died from her illness many years ago. I know because I used to follow their work and received their newsletters.

In retrospect, I'm guessing that she most likely had undiagnosed Lyme disease because Lyme disease wasn't really on anyone's radar back then.

In other words, that CIIN website's information is very outdated. In contrast, what LymeToo and others are posting is up-to-the minute.

(In fact, the dateline on one of the medical journal articles cited is May, 2016 -- and today is still only the 27th of April, 2016!)

I didn't realize how lucky we were because our daughter's allergists were prescribing NasalCrom and GastroCrom for her several decades ago.

In retrospect, she was lucky they did because I hate to think how much more ill she might have become without it.

Cromolyn sodium is a mast cell stabilizer, and that's one of the medications recommended for dealing with these newly recognized mast cell activation disorders.

Another point I'd like to suggest is that folks who fall into this catch-all diagnostic category of mast cell disorders will probably find that they have genetic polymorphisms in their DAO enzymes

if they should ever decide to get their 23andMe genetic testing done -- which is 10% off right now, as a special Mother's Day offer.

I'm guessing that they will probably also have other genetic "defects" (polymorphisms, to be scientifically accurate) in their methylation cycle which will show up on their 23andMe test results too. This is just a hunch on my part here, purely speculative.

I'm editing to add that this is where Shoeless's suggestion about taking supplemental methionine comes into the picture because methionine is part of the methylation cycle.

Be careful with supplemental calcium though because if you are highly symptomatic, then you might not be able to handle supplemental Ca, and you might have to work up more gradually on it.

Nice work, LymeToo! I was coming here to LymeNet to post my latest findings just for you, but you beat me to the draw -- by 3 days, no less. Here's something you'll like that I don't think you've found yet though:
http://ednf.org/sites/default/files/Anne%20Maitland.pdf

Also:
https://www.paallergy.org/SiteAssets/Documents/2014-Presentations/Castells%20Mast%20Cell%20Activation.pdf

..................................................

(breaking up the text for easier reading for many here)

[ 04-27-2016, 04:46 PM: Message edited by: Robin123 ]
 

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Posted by TX Lyme Mom (Member # 3162) on :
 
Has anyone here at LymeNet posted anything about Dr. Driscoll's work yet? She's way ahead of the curve on this newly recognize disorder, and lucky for us Texans, she practices in the DFW area. Here are links to one of her websites. Her work ties POTS into the mast cell disorders family:
http://prettyill.com/

I haven't purchased her book, but I found a free copy on-line of her theory explaining about it:
http://www.theilcfoundation.org/wp-content/uploads/2012/04/Driscoll_Theory_EDS_-_Online3.pdf
 

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Posted by Lymetoo (Member # 743) on :
 
Well, since you're posting about Dr Maitland, here is her You Tube Video:

https://www.youtube.com/watch?v=ktFdr-9rpIM

Shoeless .. the methionine sounds good, I think I'll check my 23andme first though, per TXLymeMom's suggestion. I had it done but have not done anything with it yet.

TXLM, I sure wish I had gone to this Dr 2 yrs ago when I first found out about MCAS, because the Cromolyn probably would have saved me from losing so many foods.

TXLM.. Be sure to order Dr Afrin's book .. you will love it.

Joe .. my mainstays of my diet (what diet??) are chicken (freshly thawed each day) .. and butter beans (oh joy.) I can eat egg yolks, so far. I scramble them.

I throw in a bit of broccoli now and then, or a few green beans, but I have to watch out for oxalates and salicylates, so it's hard. I can eat white Arborio rice, but am trying to limit that.

I can also eat Romaine or iceberg lettuce. Another great "joy."
 

---

Posted by Lymetoo (Member # 743) on :
 
I have not tried this one, but thought I would post it:

http://alisonvickery.com.au/chris-kresser-on-probiotics-for-histamine-intolerance-and-mast-cell-activation-disorder/

I like Custom Probiotics D-Lactate Free .. It's expensive BUT it lasts a long long time for me.
 

---

Posted by TX Lyme Mom (Member # 3162) on :
 
LymeToo,
I'm already over halfway through Dr. Afrin's new book. I love his writing style, even if some of it is a bit technical and over my head.

Here's what I'm thinking, based on what I've picked up over the years. We know that mast cells are part of our innate immunity -- our first line of defense against foreign invaders. That's why they are found where they are, in our skin and in our GI tract and our respiratory tract.

Well, Ritchie Shoemaker, MD teaches us that innate immunity is designed to protect us from non-specific threats, such as toxins of all sorts, especially biotoxins. We also know that Borrelia produces a low molecular weight, lipophilic neurotoxin which is difficult for the body to get rid of.

In other words, chronic Lyme is as much a problem of chronic toxicity as it is a problem of being a persistent infection -- maybe even more so(!) -- since we know that some folks test highly positive on WB antibody tests for Bb who don't have any symptoms of chronic Lyme at all.

Maybe the Lyme nay-sayers are at least partially right afterall, in this sense, at least. Maybe chronic Lyme really is more about chronic toxicity, depending upon one's genetic predisposition, than it is about persistent infections and co-infections.

(I'm speculating here, of course, but my mind keeps coming back to this possibility as being the missing piece of the puzzle for so many of us who can't seem to get well or to stay well without relapse.)

We also know that 25% of the population has methylation defects which interfere with glutathione production which is so necessary for detoxification.

So, here we are right back again at how to improve methylation in order to promote detoxification. And that's why the results of 23andMe are going to prove so valuable to us.

The difficult part of benefitting from our 23andMe results is understanding about over-methylation vs. under-methylation and how easy it is to cycle back and forth rapidly between these two conditions --

and most important of all, how to prevent getting into this vicious cycle in the first place.

That's why I was so excited when I found this next article which includes a "cheat sheet" with charts about how to select the right form of Vit B-12 and the right form of folate, based on a person's 23&Me test results.

(I encourage you to re-post this link under other methylation & MTHFR topics because it will help keep a whole lot of folks out of big trouble by simplifying an otherwise complicated problem.)
http://mthfrliving.com/health-tips/supplementing-for-mthfr-b12/

Equally important is this link to Dr. Ben Lynch'es explanation about over- vs. under-methylation:
http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

Just so y'all aren't too critical of me, I'm NOT trying to hijack Lymetoo's important mast cell topic. Instead, I'm trying to tie the concepts about mast cells into other related topics of current interest.

I can't help it. This is just how my mind operates. My best ideas are often nebulous, especially at first, so please bear with me and indulge my wild and rambling speculations.

.........................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:48 PM: Message edited by: Robin123 ]
 

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Posted by TX Lyme Mom (Member # 3162) on :
 
Hooray! My daughter tells me that Nasalcrom is sold OTC now -- ie, without an Rx. I don't know about Gastrocrom, but let's hope it is. Cromolyn sodium is a mast cell stabilizer. Google it. You'll see.

DAO enzymes work by helping to get rid of excess histamine, but they are fairly expensive. However, Nasalcrom is relatively cheap, especially now that it's an OTC item.

Both DAO enzyme products and also cromolyn sodium (mast cell stabilizer) could be beneficial in extremely difficult MCAD cases, but folks who are bordering on anaphylaxis too frequently are usually under close medical supervision anyway, we would hope.
 

---

Posted by TX Lyme Mom (Member # 3162) on :
 
I need to add one other important caution and that is to avoid the temptation to rely too heavily on anti-histamines, especially the popular long-acting ones.

All they really do is prevent symptoms by blocking the histamine receptor sites, leaving all of the excess histamine floating around and accumulating, thereby increasing the underlying problem.

Here's what the Low Histamine Chef says about the importance of avoiding habitual use of antihistamines:
http://thelowhistaminechef.com/benadryl-is-cocaine-to-your-brain/

Also:
http://thelowhistaminechef.com/antihistamines-increase-alzheimers-risk/

And this:
http://thelowhistaminechef.com/long-term-exposure-to-antigens-may-help-mast-cells/

And also:
http://thelowhistaminechef.com/kefir-may-stabilise-mast-cells-and-lower-histamine/

http://thelowhistaminechef.com/histamine-safe-ferments/

Last, but not certainly least, her bio is convincing because she is WELL now, at long last -- after having been extremely ill and incapacitated for more than a decade.

What I find most fascinating of all about her website is to observe the evolution of her thinking over these last several years and how she has come to recognize that overly strict avoidance diets simply don't work

and that true healing must come by taking a much more moderate approach to dietary lifestyle. Here's the link to her very inspirational bio:
http://thelowhistaminechef.com/about/

...............................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:49 PM: Message edited by: Robin123 ]
 

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Posted by Lymetoo (Member # 743) on :
 
Yes, I've used Nasalcrom over the years for allergies. It seemed to help until a few years ago. I quit using it, but may try again. It's been OTC since the 80's.

There is actually a Pub Med article about the mast cells being the "post lyme syndrome".. though I hate that term! So basically, I agree with you. This could be the key to what is keeping everyone sick.
 

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Posted by Lymetoo (Member # 743) on :
 
I've read the Low Histamine Chef stuff, but can't get my body to cooperate with eating salicylates.
 

---

Posted by shoeless joe (Member # 45835) on :
 
Thank you lymetoo

Seems like I can tolerate less and less foods

Im going to try and eat just 4-5 types of food for several days and see what happens.

I ate a lot of green beans yesterday and believe thats why I feel horrible today.

When you look at histamine food lists on line a lot of them contradict each other.

Im thinking eggs,fresh chicken,dress beef and a safe vegetable for a week just to see.

Thanks again, HOPE
 

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Posted by TX Lyme Mom (Member # 3162) on :
 
LymeToo and Hopeless-Shoeless Joe,

Has either of you considered LDA (low dose antigen) therapy for your food sensitivities?

It's different from other forms of allergy desensitization in that it balances the two arms of humoral immunity --

namely, T-cells which are underactive vs. B-cells which are over-active and are producing too many antibodies, if I understand it correctly, that is.

Here's a link to a list of practitioners as well as links to more information about it:

http://www.drshrader.com/lda_therapy.htm
http://www.drshrader.com/lda_physicians.htm
http://www.wycoffwellness.com/sites

/wycoffwellness.com/files/u4/LOW_DOSE_ALLERGY_BOOKLET-1.pdf
http://www.townsendletter.com/April2012/allergen0412.html

...............................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:51 PM: Message edited by: Robin123 ]
 

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Posted by TX Lyme Mom (Member # 3162) on :
 

quote:

---

Originally posted by Lymetoo:
I've read the Low Histamine Chef stuff, but can't get my body to cooperate with eating salicylates.

---

quote:

---

Originally posted by Lymetoo:

Most DAO products contain Vitamin C and I don't tolerate it. I think I recently saw one without C but I have not tried ordering it.

---

quote:

---

Originally posted by Lymetoo:

TXLM... I'm afraid of that one too! (sorry!) .. I've spent so much money on supplements I can't take. I've not been able to take Vit C for more than 25 yrs now.
I get acid reflux from it .. or bladder pain .. take your pick.

---

quote:

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Originally posted by WPinVA:
Such great information on this thread. Has anyone tried LymeMD's protocol for MCAD?

http://lymemd.blogspot.com/search?q=mcad

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quote:

---

Originally posted by TX Lyme Mom:

I need to add one other important caution and that is to avoid the temptation to rely too heavily on anti-histamines, especially the popular long-acting ones.

All they really do is prevent symptoms by blocking the histamine receptor sites, leaving all of the excess histamine floating around and accumulating, thereby increasing the underlying problem.

---

quote:

---

Originally posted by Lymetoo:
What's the difference between Kefir and Kefiran? (sorry, I'm off to bed and not taking the time right now)

PPI's? Yep, been trying to get off of them for many years.

---

quote:

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Originally posted by TX Lyme Mom:
[QB}[QUOTE] Even the MCAD expert Dr. Afrin recommends desensitization immunotherapy for MCAD, but he doesn't emphasize it nearly as much as I think he should, but then allergy is not his specialty anyhow. [/QB]

---

quote:

---

Originally posted by Lymetoo:
There is a great list that is ongoing over on the Mastocytosis FB page. Very promising list.

It's actually better than the LLMD list .. at least there are more doctors who treat MCAD, than treat Lyme.

--

TXLymeMom .. You will especially love this one!

http://www.mastattack.org/2016/05/ige-independent-anaphylaxis-or-i-havent-been-this-excited-on-a-tuesday-night-in-a-long-time/

---

quote:

---

Originally posted by TX Lyme Mom:


BTW, let's not forget that Bb can activate mast cells. There are no less than 3 PubMed abstracts, plus numerous citations for each of them, and they date all of the way back to the late 1990s -- ie. nearly two decades ago.

In other words, it has taken a very long time for this concept of mast cell activation to catch on in the Lyme community.

---

quote:

---

Originally posted by droid1226:
Six, you say that histamine & MTHFR are all that's left. Do you think it's possible that this could have been the problem the whole time?

---

No. No way. I don't disagree with your statements and think it could be part of it from the beginning. Who knows whether addressing these issues in the beginning could help the body have strength enough to fight Lyme. I don't know.

But I've been living a healthy life for the past 5 1/2 years, healthier than most people my age, but have had a few ongoing issues. Addressing histamine helped with the random allergic reactions I was having, some of which put me in the hospital even though allergy testing only revealed "minor" allergies. These symptoms were different than "Lyme" symptoms. They were clear reactions to food.

I had more of a tangible result from addressing histamine intolerance than I did addressing MTHFR. Taking the MTHFR supplement made me detox more. I'm releasing heavy metals again, for example. Testing before hadn't even shown I still had metals. They were deeply buried. More recent testing showed mercury, so I'm detoxing that with the help of MTHFR supps. So far, I'm feeling worse from that as they are released, but like anything, it's ups and downs. My "downs" are still much, much different from the downs of Lyme. And my ups are days I even have more energy than my kids.

I haven't had that lead suit feeling Lyme gives ... or fibromyalgia, which I was diagnosed with ... or shortness of breath (except for during allergic reactions), brain fog, insomnia, etc., for over 5 years, yet it's only recently that I've addressed these other issues.
 

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Posted by sixgoofykids (Member # 11141) on :
 
All that being said, I do think it's our bodies that set the stage for getting sick with Lyme Disease. The two issues I have are both genetic. So with my body not methylating right and with being in a constant state of inflammation from histamine and toxins, the stage was set for when I got bitten for it to make me crash.
 

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Posted by susank (Member # 22150) on :
 
Am reading all this with interest.

I had an appt. yesterday with my allergist/immuno.

(Six years ago was Dx'd with immune deficiency ie HypoG/CVID - different doctors).

I asked this doctor about allergies and mast cells. He said it would be impossible for someone to be truly immune deficient but have IGE allergies and/or mast cell problems. ???

An interesting wrinkle...........more weirdness.

Dunno - maybe I don't have a Primary Immune Deficiency - maybe I have a Secondary ID - caused by Lyme? Thereby capable of producing Immunoglobulin E and whatever is involved with MCAD.

I'll write more about this under a thread I started a few weeks ago.

Suffice to say - I am supposed to be taking antihistamines. Which I have avoided in the past due to making my dry eyes/mouth worse.

And.....in the news lately - isn't there something about these drugs playing a part in dementia???
 

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Posted by droid1226 (Member # 34930) on :
 
Too, good to know. I'll check them out. Who knows...This could be the first major breakthrough in lyme treatment or at least a filtering process to lower the surging number of lyme cases.

Six, I guess I minimized actually how bad I was. I remember 2 yrs in bed too weak & sick to walk. Just wish I knew about this then. It's probably an unproductive question at this point but it really interests me.

Just thinking about before I crashed, I turned my body into the perfect ecosystem to get sick & now I know histamine enzyme levels were a trigger. But ya, they weren't the only factor though.

Maybe knowing this could "fast forward" others who are at the early stages of treatment. Or at least be an easy option for people to try before bombing the body with abx or whatever.

In retrospect, I can't say antibiotics helped, with certainty but it's hard to judge treatments objectively because results were so subtle & drawn out.

I do have the single MTHFR left to address as well but after so much research on it, it still seems very speculative as far a treatment protocol. Such a balancing act of so many variables.

For me, coffee enemas are the most universally effective treatment for MTHFR. Albeit, they aren't my cup of tea, so to speak..they can replace my inefficient liver. The benefits are endless. After consecutive months of daily treatments, my metals were significantly lower as well. I never found methylation/folate/B/Yasko supplements beneficial.

Also Six, I think I remember you talking about eating fermented sauerkraut with every meal, is that off the board now that you're managing histamine levels?
 

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Posted by sixgoofykids (Member # 11141) on :
 
No, I wasn't thinking about how bad you were or anything like that .... I was just saying for me, I know it wasn't the problem. I think the time to have known about this stuff would have been before I was bitten! If our bodies had been healthy, maybe we would have been able to fight the Lyme before it took hold.

My homocysteine was high, so I'm taking Homocysteine Supreme for MTHFR. I did many coffee enemas, I don't feel I need that anymore and they're kind of time consuming. I take milk thistle and NAC for my liver. What works is probably different for everyone.

I did eat sauerkraut every meal for a while when I was rebuilding my gut. Not caused by it, but I got a kidney infection (four years ago) and contracted c diff when I was in the hospital and didn't know it. I finally found out 3 years later (a year ago) and treated it. So, as a result, my gut was destroyed again after all that work.

I was having random allergic reactions back when I was eating the sauerkraut every day. Had no idea they were related. I knew nothing of histamine then. I'm trying to ease back into taking probiotics.
 

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Posted by Lymetoo (Member # 743) on :
 
Susan .. "sammy" here has MCAS and is immune deficient. She takes IVIG.

Also, most who have mast cell problems do NOT have IgE allergies. You can still have MCAS and/or anaphylaxis WITHOUT an IgE allergy.

Here is an article on the connection with depression and histamine, as well as "undermethylation."

http://secondopinionphysician.com/treat-elevated-histamine/
 

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Posted by droid1226 (Member # 34930) on :
 
No, I know. I was sort of typing out loud, thought I had an ah-ha moment but you're right. I'd like to think that this was all just histamines the whole time, but I know systemically the problems run deeper for most people here.

That's awful about C-diff. I just read somewhere that hospital error is now the 3rd leading cause of death in U.S., right behind cancer. Reckless healthcare.

Anyway, good info.

That's good to know about sauerkrat. I know a few people who eat it regularly, it might be detrimental depending on what stage of recovery they're in.

In one of Lymetoo's links, I found this really cool. It's a very basic test to check if you're immune is overreacting with histamines.


 

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Posted by droid1226 (Member # 34930) on :
 
That link Too sent says Turmeric is bad for this illness, as it lowers the DAO enzyme-the enzyme that elevates histamine.
 

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Posted by Lymetoo (Member # 743) on :
 
Yes, I have the dermatographic skin. At least it's not a problem, as such.

I did get myself into trouble by overdoing the sauerkraut. I was trying to heal my gut. That was not a good move, but as Six said... It didn't CAUSE the illness.

I have been taking Curcumin for years and I imagine it has lowered my DAO, but it is the ONLY thing I can take for pain and inflammation.
 

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Posted by susank (Member # 22150) on :
 
Tutu - thanks.
Not sure what to believe.
I think this doctor is saying maybe I don't have an immune deficiency and don't need IVIG.

I looked at old lab tests and the higher my total IGG - the higher my total IGE. My IGG of course goes higher with IVIG. I guess my body is making IGE antibodies against the IVIG.

So I will be off IVIG/SCIG for three months - get it out of my system - then do more testing.

Something going on - I feel certain triggered by Lyme and Co's. Allergies and mast cells and who knows what else.

FWIW I have read where it is possible to be immune deficient ie CVID - and still make IGE antibodies. Some gurus/doctors say that can't happen - some say it can happen.

Will continue to research the MCAD stuff
- see what I can do on my own that regard.
Thanks for the thread.

Oh - and while at the doctor - waiting - I saw a poster about Xolair. A friend of mine takes it for asthma. I was going to ask the doctor about it for me - had it in my notes to ask in regards to IGE. Interesting that Xolair used for mast cell degranulation - something like that.
 

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Posted by droid1226 (Member # 34930) on :
 
Ya, in the past couple yrs turmeric has been shown to do everything but raise the dead. It's overwhelming health benefits outweigh one possible negative.
 

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Posted by Lymetoo (Member # 743) on :
 
True, droid!

Susan, yes.. quite a few MCAS patients take Xolair. I don't want to take that unless things get out of hand. Too many side effects.
 

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Posted by Lymetoo (Member # 743) on :
 
The Histamine/Mast Cell and Depression Connection:

http://thelowhistaminechef.com/the-histamine-mast-cell-depression-link/
 

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Posted by sammy (Member # 13952) on :
 
Thank you Lymetoo, I do struggle with MCAS.

SusanK, not all allergists are knowledgable in all conditions (especially CVID & MCAS). Also, you do realize that your doctor has given you false information, right?

You need to see a doctor that specializes in Mast Cell disorders. Only they will be able to properly evaluate you and run the right tests needed to diagnose one of the Mast Cell disorders (there are more conditions than just MCAS!)

My Ehler's Danlos Geneticist referred me to my Mast Cell specialist after I had anaphylactic reactions to Toprol XL and Coreg, both beta blockers (prescribed for Autonomic dysfunction & low blood pressure).

Apparently, those anaphylactic reactions are common Mast Cell reactions. Big sign.

I've been allergy tested and have no IgE reactions. The only thing I reacted to was the histamine control and that formed a crazy welt!

The tests done by the Mast Cell specialist revealed that I have MCAS. The doctor suspects that I have a more severe form of Mast Cell Disease but would need a bone marrow biopsy to diagnose it.

To control my symptoms, I take compounded Ketotifen capsules, Xyzal, and Pepcid, all twice daily. I also take Gastrocrom 4x daily. These are my Life Savers!

Those who can chose not to take medication are blessed. I have no choice. It is dangerous for me not to take both mast cell stabilizers and histamine blockers.

I cannot eat any of the recipes that the Low Histamine Chef posts. They looks so yummy and healthy! But not for me. My body revolts.

Some days, all I can eat are whey smoothies made with milk or Boost! I know, some may people freak out and because it isn't low carb! When you don't tolerate anything else, Boost becomes acceptable.
 

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Posted by Lymetoo (Member # 743) on :
 
Good to hear from you, sammy. Very good information for all of us. Thanks!

I cannot eat what the Low Histamine Chef eats either. I'm glad I'm not the only one who has "failed" at that!
 

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Posted by sammy (Member # 13952) on :
 
Also, since I'm posting, clearly you can have an Immune. Deficiency and have MCAS (or any other Mast Cell disorder).

Also, IgE allergies are not really involved or should I say, not the main cause of Mast Cell Disorders/Reactions. Mast cells can be triggered and cause reactions by foods, heat, activity, emotions, infection,...

My Mast Cell Specialist is the head Allergist at the hospital where I also see my Clinical Immunologist (Hematology/ Oncology dept.) for CVID. I'm told that people travel from far away to see my Mast Cell Specialist.

SusanK, why would you stop your IVIG? You don't need to stop it for Mast Cell testing.

Sounds like you need better guidance from a Clinical Immunologist. Is it possible that you can get a second opinion at maybe a University Hospital?
 

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Posted by Lymetoo (Member # 743) on :
 
No IgE allergies here either. What's weird is that many years ago I was treated for tons of IgE allergies with allergy shots.

I hope Susan comes back!
 

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Posted by sammy (Member # 13952) on :
 
The blog mastattack.org has a wealth of information to help you understand the basics to even the most complex topics that involve Mast Cell diseases.

This has been the most helpful, concise source of information for me. It touches on topics that are not discussed elsewhere!

You can now search the blog by topics which is nice. (Some do contain personal experience which I like!)

For each topic you read, the original research articles are included as a reference so you can learn more if desired.
 

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Posted by Lymetoo (Member # 743) on :
 
Yes, I love her info. www.mastattack.org

--

Excellent article on the science of histamine.

http://www.diagnosisdiet.com/histamine-intolerance-science/
 

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Posted by susank (Member # 22150) on :
 
I feel pretty icky but will try to reply.

FWIW there has been discussions on the IDF forum about speakers at conferences saying folks with immune deficiencies don't have true allergies.
If they mean IGE - don't know.

I could see if one had SCID that no IGE would be made.

But for HypoG/CVID - dunno. I think IGE is a different class of Immunoglobulin? Whereby low levels of G,A,M would not mean low/no IGE.
But if they all start life as B and or T cells?

But yes I have read and others have said - that HypoG/CVID one can have elevated IGE levels.

Here are my labs this regard: (IGE and IGG)

Oct 2009 ~130 - no ID suspected yet
July 2010~180 - testing - total IgG 560's
Dec 2011 ~380 - had tried IVIG - off four months
April 2013 ~1450 - 9g/week SubQ - IGG 1100's
March 2016 ~320 - 2-3g/week SubQ - IGG 660

I had a horrible time with the 9 g/week so I ordered the GAME test myself. I remembered I had these results - so showed them to the doctor last week.

To me it looks like I make IGE antibodies to IVIG/SCIG. The doctor seemed to agree.

I don't know if IGE in 1400's is considered high. ?

Anyway, the doctor said to be off SCIG for three months to do testing. Check my IGG and IGE then.

Also....I never have done the vaccine challenge.
I'll need to do that. (debating...)

When doing testing years ago Labcorp averages for IGG around 560. Quest one time 500.
I have three subclasses deficient.
Total IGA deficient but not terribly so.

Looking at labs results from previous years - I note that before my "crash" (Lyme?) my Globulin and A/G ratio normal on CBC/CP's.
Then that changed - to Globs being low and A/G ratio high.

Could Lyme/Co have caused a secondary ID?

Around the time of my Lyme Dx - I was Dx'd with an immune deficiency - HypoG. Started on IVIG.
Curiously around that time is when I started getting bad respiratory infections. Hospital/ER's for IV Rocephin etc.

The past couple of years I have not had these resp. infections - and curiously that during the time I asked to be on a much lower dose of SCIG.

Coincidence? All so complicated......

I know I am having allergies.
IGE and maybe mast cell.

I am also a chemical sensitive and have been childhood. It hasn't happened since my early 20's but I would break out in hives when trying on new clothes or sleep on unwashed sheets.

And......my first IVIG of 30g. Did fine during infusion. The next day I went to blow my nose - as usual - with toilet paper. Felt like my head was going to explode. I was hot with infused antibodies and whatever chemicals in the toilet paper (I inhaled or just came in contact with) my body said a big NO to.
That reaction defininitely caused by the IVIG.

I'm not so sure I want to continue with IVIG or SCIG. Perhaps too many side effects for me.

Whatever I do - I feel worse day by day.

Sorry I wrote so much - cannot condense.
 

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Posted by Lymetoo (Member # 743) on :
 
Susan .. There is a Mast Cell doctor in Austin. I would sure get it checked out. It could up your chances of feeling better.

Sammy will have to address the immune deficiency problems because I know too little about it.
 

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Posted by Lymetoo (Member # 743) on :
 
Comments on MCAS:

"While it is an immune disease, it is not technically autoimmune. It can occur secondary to autoimmune disease or falsely elevate autoantibody levels, but MCAS is not technically autoimmune as there are no antibodies directed at the mast cells.

I generally describe it has an overactive immune system that causes mast cells to be trigger happy increasing the histamine load which causes the body to act as if it is allergic to almost everything even when not truly allergic to a substance."


"This is a GREAT explanation, thank you. I have a hard time explaining how I can have MCAS and immunodeficiency. I guess MCAS is allergic immune responses and immunodeficiency is bacterial/virus responses. To be honest, I still don't understand. But it is in Dr Afrin ' s book about it being a possibility."

"I tell people my husbands mast cells are normal numbers, but they are dysfunctional. They release too much histamine which causes inflammation. With enough inflammation, it attacks organs and systems until they become dysfunctional or damage. My husband is MCAS.

I and our kids are SM. I explain it the same way except our bone marrow produces too much of the precursor to mast cells...we have too many mast cells."
 

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Posted by Lymetoo (Member # 743) on :
 
I don't believe this one has been posted:

The Role of Mast Cells in the Defence against Pathogens:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/
 

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Posted by Lymetoo (Member # 743) on :
 
Mast cells, histamine, inflammation and obesity

http://thelowhistaminechef.com/mast-cells-histamine-inflammation-and-obesity/
 

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Posted by shoeless joe (Member # 45835) on :
 
lymetoo, may I ask how you are doing now on the cromolyn sodium?

Thank you
 

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Posted by Lymetoo (Member # 743) on :
 
I think it's working. I have had a little easier time eating more foods, but then I overdo it and have setbacks.

I have resigned myself to begin using an anti-histamine on a more regular basis. I feel so much better when I take them, but I really don't want to take them!!

Thanks for asking. I hope that if this is an issue for you that you will be able to find someone to help you.

The cromolyn can take up to 6 months to kick in and I'm only beginning month 3 now.
 

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Posted by TX Lyme Mom (Member # 3162) on :
 
LymeToo,
This might seem off-the-wall and totally unrelated, but in our experience, our daughter has often suffered from multiple food intolerances anytime that her mold allergies were out of control. We had a recent reminder of this after she moved to Houston 3 years ago.

I worried that she was having a Lyme relapse, but she insisted that it was inhalant allergies instead -- primarily molds and pollens in the warm, muggy Houston climate. She went back to her old AAEM allergist and he suggested mold allergy shots, which she agreed to.

It was like flipping a light switch. She walked into his office so ill that I had accompanied her for fear that she wouldn't be well enough to drive back home again in the metroplex traffic, but by the end of the day after he gave her a neutralizing dose of mold extracts, she felt 100% better almost instantaneously -- well, within 30 min.

I couldn't have imagined it, and I probably wouldn't have believed it if I hadn't been there in person to witness it. It made a tremendous difference in her appetite and in her ability to digest foods again -- immediate effects, too, because we went out to eat together at the end of the day, and she ate voraciously.

You live in an area that has had a lot of bad storms this spring, with possible flooding which can lead to both indoor and outdoor molds. Knowing as we do how great an impact mold allergies can have on the GI tract and on allergies in general, I would encourage you not to overlook the possibility that mold exposure could be at the very root of your mast cell activation.

Remember, molds produce mycotoxins, and toxins are at the very heart of mast cell activation, if I understand the theory behind it correctly. Furthermore, we swallow the mucus from inhalant allergies, and those toxins enter the GI tract and impact our gut flora, so this idea is not as far-fetched as it might seem at first glance.

The best allergists for treating this are members of the AAEM (American Academy of Environmental Allergy), in our opinion. They do the old-fashioned skin testing called "provocative neutralization" (PN), and in our experience, it is the very best testing technique for treating mold allergies effectively.

One way that it is different, and this is VERY important, is that each mold is tested separately, and then your personalized antigen extract is made up of these various components by a compounding pharmacy just for you. These are NOT stock mold mixes, which other allergists use.

You can be exquisitely sensitive to one or two particular molds, but much less sensitive to other molds in the same group. That's why they are tested separately so that the dosage for EACH mold is calibrated (if that's the right word) precisely into your compounded mold extract so that you are not over-treating one mold while under-treating another one.

This form of allergy testing is more costly than routine allergy testing because it is very labor-intensive and time-consuming, but it is the most cost-effective method of treatment, in our opinion, for molds and other inhalant allergens, such as dust mites and animal dander, etc.

There is an excellent AAEM allergist in your area who also treats Lyme disease. You probably know whom I'm thinking about. I would encourage you to consider this possibility because I know how much it has helped our daughter with her digestive issues and food intolerances. Feel free to PM me for more details, if needed.
 

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Posted by shoeless joe (Member # 45835) on :
 
thank you lymetoo

Hmmm,I thought after a few weeks of cromolyn you would know if its working.

I called my doc this morning to see if I can give it a go.

Im pretty sure she will let me but if she doesn't Im thinking of try a combo of h1 and h2 blockers.

May I ask if you have low blood pressure?

Thanks very much,I need to catch a break with something.

Anyones tryptase levels off?
 

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Posted by Lymetoo (Member # 743) on :
 
Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.

Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.

Joe .. No, it takes several months for the cromolyn to work. I felt better in a few days though so I was encouraged by that!

Yes, to low blood pressure. Very common with MCAS, but I also take Verapamil for my heart.
 

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Posted by TX Lyme Mom (Member # 3162) on :
 

quote:

---

Originally posted by Lymetoo:
Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.

Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.

---

LymeToo,
Check your PM for a more detailed response. For the sake of others who might be interested in an answer to your question, it all depends on what method of allergy testing was done?

For example, mainstream allergists often test for allergies in the blood, by the RAST method, which depends on IgE. But if you have low IgE, as some folks do, then you would get a "false negative" test result.

I don't want to bore everyone else with any more details than just this because I don't want to detract from the main theme of your topic. That's why I'm sending you a PM instead.

TXLM
 

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Posted by Lymetoo (Member # 743) on :
 
WOW .. Great article (ignore what he says about B6 though)

-

https://selfhacked.com/2014/08/01/deal-histamine/
 

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Posted by shoeless joe (Member # 45835) on :
 
well we will see,got my cromolyn today( 722 bucks,covered).

Hope,hope,hope
 

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Posted by Lymetoo (Member # 743) on :
 
That's great! Did you have to pay very much?

Mine was $1200 .. paid $15!
 

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Posted by shoeless joe (Member # 45835) on :
 
Insurance pretty much covered it but unfortunately my insurance changes in a couple of months.

Is there a generic?

My stomach wasn't to bad today until I had some leftover veggies and I felt them.

I break into sweats after eating ,also gerd and congestion after eating,you?
 

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Posted by sammy (Member # 13952) on :
 
Cromolyn Sodium is the generic form of Gastrocrom.

It helps me greatly with the GI issues but is not a cure.

Be sure to take it at least 30 min before eating and on an empty stomach. You MUST do this consistently. If you skip doses, you won't see the positive results! I learned the hard way...

I still take Xyzal (RX new Zyrtec) twice daily, Pepcid twice daily, and 2mg Ketotifen compounded capsules twice daily.

The Ketotifen has helped the most as it is both an antihistamine and a mast cell stabilizer.

I still have significant symptoms. It would be nice if my doctor increased my dose of Ketotifen. Ideally, I would like to increase it until I could start dropping the RX H1 and H2 blockers.

If you are interested in Ketotifen, Infuserve America compounds the capsules with an RX. The pharmacists are super knowledgable and helpful. They have excellent competitive prices too, so no worries there! (My only wish is for my insurance to cover it!)

I try to avoid known triggers, including foods but that is hard. My symptoms are triggered after short bouts of activity (such as getting dressed and brushing teeth!), emotions, heat, and the biggest trigger seems to be Lyme and Co's (as I got reinfected last summer too).

For me, "trying" to avoid triggers is nearly impossible. I do my best. The medications help me to not react so strongly and inappropriately so often so I don't have to fear a bout of anaphylaxis.
 

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Posted by Lymetoo (Member # 743) on :
 
Shoeless... Careful about leftovers. I rarely eat anything that is leftover...esp NO leftover protein.

I break out in sweats at weird times .. so it's hard to say why that happens.

I get congestion if I eat foods high in salicylates .. esp chocolate.

sammy.. I'm glad you have the ketotifen. Did it make you gain weight?
 

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Posted by SickSam (Member # 45330) on :
 
I'm seriously considering trying MCAD treatment. The Cromolyn I was prescribed is inhaled via nebulizer 4x a day. Are the rest of you using an oral Cromolyn? I wonder if a nebulized version works faster or something...
 

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Posted by Silverwolf (Member # 9196) on :
 
Just Silverwolfi here,

I got a reminder to check this thread again, Thank You <<<<< TXLM >>>>>!!!

And <<<<< Lymetoo, and each replier >>>>> for getting the info' links and thot's, where we can find them to do more research!!!

I'll be back in to read thru these links.

Jus' that Silverwolfi here.
 

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Posted by Lymetoo (Member # 743) on :
 
Sick Sam .. I would think the nebulized version would be for asthma. The Cromolyn I get is in "ampules" .. they are mixed with water and I chug it down. Pretty tasteless. Four times a day.

Silver .. I hope you can find a way to get better!!
 

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Posted by SickSam (Member # 45330) on :
 
I think it usually is for asthma, but this was prescribed along with a -bunch- of other stuff for MCAD by a LLMD who treats MCAD frequently. The 4x a day does match up with what you do, though. Maybe it's just another route of administration.

He prescribed this almost a year ago and I'm just now getting around to thinking about trying it. I've realized histamine and mast cells are probably a much bigger problem for me than I originally thought.
 

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Posted by shoeless joe (Member # 45835) on :
 
uuuugh,all the histamine food lists contradict.

What one do you follow?
 

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Posted by droid1226 (Member # 34930) on :
 
Joe, you could try eating raw because in general it's lower histamine. Also take a couple antihistamines for the raw foods that aren't low histamine.

It could make all the difference, I think it's worth a try. This was my simplified way to go low histamine cause I was so frustrated with diet lists that contradicted each other.
 

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Posted by Lymetoo (Member # 743) on :
 
Sam.. The ampules are so the med gets into the gut. That helps prevent the mast cells from breaking down.

Everyone is sensitive to different things, so it's all trial and error.

Don't forget about Dr Afrin's book as being another great resource. It could be an eye-opener for you. If you tackle MCAS and Lyme at the same time you should recover more quickly!
 

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Posted by SickSam (Member # 45330) on :
 
Thanks Lymetoo I sincerely think I'm gonna do this. After all this time I feel like I might be able to get a handle on this disease finally, if my heart can hold out a little longer.

"LymeMD" is who prescribed the nebulized Cromolyn for MCAD, and he says people respond quickly to it. I also read a case of MCAD causing pericarditis and Cromolyn helping, so I'm really hoping this will help my heart.

When I had a strong response to a histamine wheal during allergy testing I realized I had a histamine problem. Then I realized the reason my face stays swollen is because of histamine. I think treating MCAD and Lyme together will keep my body from making a bigger mess of itself when Lyme is killed!
 

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Posted by SickSam (Member # 45330) on :
 
Also, I'm NOT saying I recommend this, but I just want to put it out there for anyone that might get an "aha" moment from it...

LymeMD told me that benzos (like klonopin) can inhibit mast cell activation. Since I was taking a benzo at the time, I was told to break it up and take the pill throughout the day to inhibit the mast cells.

I don't like benzos, I'm off them now, but if you've been helped by a benzo perhaps it was doing more than just stabilizing your mood. Maybe, possibly, it could've been stabilizing your mast cells too. More info can be found using our friend Google.
 

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Posted by SickSam (Member # 45330) on :
 
Sorry to post yet again...

Lymetoo, looks like maybe you're right about the nebulized version:

From http://lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html?m=1
----
"Cromolyn however, is the most effective mast cell stabilizer. Cromolyn is available in nasal in oral inhaled forms which may not be terribly effective. In my experience, Gastrocrom, the oral form, is very effective. Only a small percent is adsorbed systemically but this seems to be enough. The drug comes in a liquid form needs to be dosed 4 times per day. Two ampules or 10 cc works best."
----

So now I'm left wondering why I was prescribed the nebulized version. I'm sure there's a reason. So many questions...
 

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Posted by Lymetoo (Member # 743) on :
 
Do you think he prescribed it because it was cheaper? The liquid is very expensive.

I do have Ativan that I take when I can't get things calmed down. I really DO NOT want to become dependent on that one, for sure!

But it does indeed work very well.
 

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Posted by SickSam (Member # 45330) on :
 
I really don't think it was a cost thing. He assumed insurance was covering everything, so he never really paid much attention to cost. So I really don't know...
 

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Posted by SickSam (Member # 45330) on :
 
I just found this case report. A woman with MCAD was on H1/H2 blockers and oral Cromolyn. She required the addition of nebulized Cromolyn for further improvement in fatigue and bone pain.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904792/

I'm still trying to put all the pieces together! Looks like the nebulized version does something at least.
 

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Posted by Lymetoo (Member # 743) on :
 
OH good! I'll check it out!

"It is poorly absorbed through all body surfaces apart from the bronchial mucosa where the entire drug reaching the bronchial mucosa after inhalation is absorbed."

That must be why she got better. I noticed it was the first time it was used for SM. Date was 2010.
 

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Posted by Lymetoo (Member # 743) on :
 
COMPREHENSIVE ARTICLE ... (AND BOOK REVIEW OF DR AFRIN'S NEW BOOK)

http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/
 

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Posted by SickSam (Member # 45330) on :
 
Great article Lymetoo, thanks for sharing!

I also found this. Japanese Knotweed might inhibit mast cell activation:

https://examine.com/supplements/japanese-knotweed/
 

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Posted by aklnwlf (Member # 5960) on :
 
Very interesting thread. Looking into this myself and trying to find a doctor that can provide a diagnosis.
 

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Posted by aklnwlf (Member # 5960) on :
 
OK, have an appointment for the 20th with an allergist. Hope he's the right kind of doc. Talked briefly with office staff and they said he does treat MCAS. Fingers and toes crossed!
 

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Posted by Lymetoo (Member # 743) on :
 
I hope he can help you! That would be great!


 

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Posted by Lymetoo (Member # 743) on :
 
http://acidicbody.com/histamine-toxicity-high-histamine/
 

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Posted by t9im (Member # 25489) on :
 
Hi Lymetoo:

Thanks for this thread as my daughter was just diagnosed with this and I've a lot of reading to do.
 

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Posted by Lymetoo (Member # 743) on :
 
So sorry to hear, but I hope the diagnosis will get her some treatment that will help her!
 

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Posted by Lymetoo (Member # 743) on :
 
How to treat Histamine Intolerance

https://selfhacked.com/2014/08/01/deal-histamine/


MCAS by Dr Afrin:

https://drive.google.com/file/d/0BxK4lGunsmzgLXhrUk9NYVRHemc/view
 

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Posted by LisaK (Member # 41384) on :
 
I trying to read all this , sorry if I missed this one, but has anyone tried taking
NeuroProtek
?

how was it and whats the difference between the original and the low phenol?
 

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Posted by Lymetoo (Member # 743) on :
 
The low phenol would be for those of us who are sensitive to salicylates. I'm still too chicken to try it. It's pretty expensive only to find out that one pill would make me ill for 48 hours.

I would suggest buying Dr Afrin's book and then get on one of the Mast Cell FB groups. They have lists of doctors who can help you.

It's like trying to find an LLMD, only worse. Hopefully, the news is spreading and more doctors are being educated.
 

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Posted by Rivendell (Member # 19922) on :
 
I probably have this, since I react to everything.

But I find it interesting that lone star ticks can cause red meat allergies. I'm betting we become allergic to way more things than just red meat after being bitten by a lone star tick.

Maybe being bitten by a lone star tick plays a part in abnormal histamine reactions.
 

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Posted by Lymetoo (Member # 743) on :
 
---and lucky me, I've probably been bitten by about 100 of them .. at least.

We grew up going to our cabin in the woods and got tick bites every weekend. We had no clue they could be dangerous back in the 50's and 60's.
 

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Posted by Marnie (Member # 773) on :
 
My hand is up. I'm fighting chronic Cpn -> infection triggered asthma (IgE to Cpn is up.)

Cpn and Bb both trigger H2R. Remember Tritec?

Neutrophils release histamine and mast cell degranulation -> histamine release.

MANY foods are high in histamine which is harmful to a fetus, so pregnant mom's Cu DAO enzyme soars.

Look at the eating for your blood type diet...what you shouldn't be eating, but love.

There's an alternative...taking the lectin (a protein) blocker for your blood type (before a meal) and daily prebiotics and probiotics as well as a daily vit. supp.

Far easier for me (B+) than giving up chicken and corn...This is what I ordered to try:

https://www.amazon.com/Daily-Essentials-formerly-Basic-Pack/dp/B001LTZ40U/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1515702173&sr=1-1&keywords=Daily+Essentials+B


Look at I3C and peanut allergies for starters ;-)

I3C comes from certain foods we eat, but we can take it in supplement form.

Mg is anti-histamine...
 

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Posted by Lymetoo (Member # 743) on :
 
Wow, Marnie. I do know that lectins are an issue for me.
 

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